Tuesday, July 28, 2009

Being Sick in Nigeria vs Sick in America

As a transcontinental transplant, I experienced alot of dramatic changes in how I was treated as a sickle cell patient in Nigeria vs my treatment in America.

Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.

I've gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn't care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn't...and even though I resented this, my hospitalizations usually never exceeded 5 days.

Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.

When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.

Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland...had I known, I should have just stayed right where I was in MI.

In Maryland, I got the worst treatment that I've ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.

California was an extension of my Maryland experience...but the medical professionals in Cali were by far some of the most callous people that I've ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying "You've had sickle cell all your life, you should be used to the pain by now." It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.

I could go on and on and on, and I'm sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell---they are treated like the bacteria on top of pond scum---and made to feel like they don't matter, they are worthless and their pain doesn't count.

When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient's cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States...I'm sure you now can understand.

Thursday, July 23, 2009

Mayo Clinic on Nicosan

Nicosan is referenced on the Mayo Clinic website. We're moving on up!

Check it on the end here

Saturday, July 18, 2009

Oldest Person with Sickle Cell is 83

[NAME REDACTED BY REQUEST] is an eighty-two year old woman who may be one of the oldest American living with Sickle Cell Disease (SCD). She is an advocate of the disease which affects millions throughout the world and is particularly common among people with ancestors in sub-Saharan Africa, Saudi Arabia, India and Mediterranean countries such as Turkey, Greece, and Italy and Spanish-speaking regions of South America, Cuba and Central America.

In the United States, Sickle Cell Disease affects more than seventy-two thousand people and about two million Americans carry the trait for SCD, a life threatening disease that creates unimaginable pain and suffering. Support is probably the most important factor in the life of the patient.

S.C.A.T.T. (Sickle Cell Action Through Technology) is geared towards helping to supplement the needs of patients who find themselves facing insurmountable health as well as financial challenges. Patients from around the country call for advice, or a word of encouragement.

Guess you'll live to be an Octogenarian too!

Thursday, July 16, 2009

In the Hospital in Pain

There is a great discussion over at the Ning Sickle cell board over coping when you are in the hospital in pain and doctors don't believe your pain and ask you what your doses of pain meds are, and when you tell them, they respond "Oh that's too high, that can't be right, I'm only going to give you half of that or less..."

Usually, they ignore whatever you say, and go by whatever they feel is right---which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I'm sure we all can relate to that in one form or another.

Remember, you have to be your own advocate!

If you are ever in a similar situation like this (and I hope you aren't), take a page from my book. I called the Operator, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It's usually when someone higher in the chain of command gets involved that stuff happens.

It's sad that people with cancer have their pain managed better and are treated with dignity. Sickle Cell warriors are treated like drug addicts, stigmatized, insulted and ignored. When is this every going to end? Grrrrrr!

Saturday, July 11, 2009

Sickle Cell costs $$$

A new study shows that the annual cost of medical care in the US for
people who suffer from sickle cell disease exceeds $1.1 billion. Check out the full article HERE.

They report that the average total cost of care per month per patient was $1,946, with substantial variation across age groups.

Total costs per patient-month were highest in adults, peaking at $2,853 per patient-month for patients aged 30 to 39, and lowest in children from birth through age 9, at $892 per patient-month.

On an annualized basis, the total cost of care ranged from $10,704 for children aged 0 to 9 years to $34,266 for the age 30 to 39 group.

"For an average patient with sickle cell disease reaching age 45, total undiscounted health care costs were estimated to reach $953,640," the researchers report in the American Journal of Hematology.

Roughly 80% of the costs were associated with inpatient care; 3.2% of costs were associated with emergency department (ED) use, 0.9% with physician visits, and 3.6% with prescription drugs. The remaining 11.7% of costs was from "other care," including home health and nursing home care.

Also, they note, "The high proportion of sickle cell disease costs associated with inpatient hospitalizations suggests that interventions that reduce complications such as pain crises could be cost-effective, even cost-saving."

Check out the full article HERE.

Tuesday, July 7, 2009

Beautiful July...

Hello! What's up everyone?

I'm still here, chilling in Portland, enjoying wonderfully beautiful summer days. For the 4th, of course I hit up the waterfront and did the fireworks thing...it wasn't as spectacular as last year (dratted economic crises!), but it was decent.

When I was leaving my house that hot summer afternoon, my friend asked me why I was carrying my bulky sweater with me. Later that night as she shivered in the arms of her beau, I wrapped myself in my blanket and sweater, comfortable and warm. I guess having sickle cell has taught me to always be prepared for the cold!

On the Nicosan front have no fear peoples. The winds of change and progress are making their way slowly but surely to us. Hopefully things in Nigeria with XECHEM will be resolved soon.

As you can see, my blogging has become once a week. If you have a question that you would like answered about sickle cell anemia, shoot me an email or leave a comment. I'm not expert, but I can only tell you how I've dealt, am dealing and coping with the issues that SSA brings.